The Journey to a Brand New Beth

Twitter? Yes, Twitter.

2011-10-14T18:46:00.000-07:00

I'm not the best writer and that's gonna be evident by this blog. The thing is, I love Twitter. I'm kind of an addict. I happen to think everyone should be on Twitter, whether you actually Tweet or just follow others. So let me help you get started or give you a few extra people to add to your follow list. Trust me, I know something about needing to be entertained. I've got alotta time to fill.

5. Sarah Colonna @sarahcolonna
I can't describe how funny I think this woman is. She is my favorite female comedian and I got to see her live stand up earlier this year. She often tweets sarcastic, irreverent jokes and rips on her castmates. She makes fun of herself including her dating life and where she's from. I never skip over her tweets and honestly, that's saying a lot. I can only say that about a fraction of the people I follow. Sarah's a roundtable regular and writer for Chelsea Lately and After Lately. She recently wrote a book called "Life as I Blow It" and also has a sitcom that just got picked up by the same name. Sarah's just plain funny and somehow she makes me feel like we could sit down for a drink and chat and be friends. Maybe that's just wishful thinking.

Nah, she'd like me for sure.

4. Lil "C" @kingofkrump
Look guys, there's something about me you don't know. Or I don't know, maybe you do. I confess, I LOVE hip/hop. The culture, the music, the dancing, all of it. I get it. It makes no sense. I grew up in Southern Indiana in a town of 8,000. The definition of midwestern small town. I can't help it, I've fallen in love with it in my adult life. So, who is Lil C? He's just the man responsible for an entire genre of dance called krumping, that's all. I don't want to cross any lines and explain krumping as hip/hop dancing. It's not. If you wanna understand it better, I highly recommend you look up the documentary called Rize. It's inspiring and shed light on a way of life I didn't know a lot about. I realize my limitations in understanding something that came from a world I've only read about. I just know that Lil C is an innovator, a creator and he's inspiring to watch and listen to. He dances, he raps, he choreographs, I don't know, he probably makes magic too. I follow him on Twitter to get access to his most recent work in music and dance. He's also got a way with words and is often poetic and thoughtful in his posts. He purposely misspells words and makes up his own. Maybe I have a little crush, but that doesn't mean I'm not objective.

He's def ##Bucc!!!

3. Jeff C @ajeffclawson
So, Jeff's not "famous" and you may not have ever heard of him, although I wouldn't be surprised if you did someday. Jeff's a teacher in the Indianapolis area and he's actually a friend of a friend. I know him from his work at local improv company, ComedySportz and as a member of long form sketch group, Three Dollar Bill. I only marignally know him but I gotta tell you, to me, he's one of those people whom you meet and you like instantly. And man, is he funny. I have so much fun watching him on stage and his physical comedy makes me laugh more than anyone else I've seen. Obviously, when I found he was on Twitter it was a no-brainer to follow. I haven't been disappointed. He uses really intelligent, sharp humor. I love that he has an ongoing commentary on different subjects using hashtags like #MyDumbassSuburbanProblems, #ILoveMyWife, and #BewareDaHorsies. If you choose to follow Jeff and you don't at least chuckle to yourself once a day, then I don't know what's wrong with you.

(No pressure, Jeff.)

2.My number two has been deleted because I changed my mind. Just follow me on Twitter if you wanna. @bethfortwendel

1. Stuart Scott @stuartscott
STUART SCOTT IS ONE OF MY FAVORITE PEOPLE I'VE NEVER MET! I'm serious when I tell you that following Stuart on Twitter has changed my life a little. Lemme explain. First of all, if you don't know who Stuart is, you need to watch ESPN like normal people. Seriously, I started following him because I LOVE sports. All my life I've been the girl who would choose ESPN or some baseball or football game over sitcoms and soap operas. I don't know what I'd do without ESPN and Stuart has always been my favorite Sportscenter anchor. These days, watching sports is a kind of escape for me. There's competition, heartfelt stories and hope. I love it and I get wrapped up so easily. Scleroderma has landed me on the couch more so than I appreciate and televised sports and sports news is a Godsend. So, thanks to ESPN for that. And Stuart entertains me. He's funny and uses clever, cool catch phrases. I wanna be cool like Stuart.

Second of all, Stuart is an awesome father/person. He uses Twitter often to tell stories about time with his children and the joys of parenthood. He shares his love for his kids and his hopes and dreams for them. He constantly praises them to all of us complete strangers and celebrates their unique qualities. I'm so impressed by this because I see parenting as THE most important job any one of us could have. I don't have children, but if I did I would want to have children with someone who views parenthood like he does. It's refreshing.

Third of all, Stuart has inspired me. He has cancer. At the time I'm writing this, I don't know what his current status is, but I know that for months I have read post after post of positive words and an attitude that I wish I could manufacture for myself. He has shared his journey through chemotherapy and tests with honest feelings about fears and triumphs. Each Tweet, each day that I read that has showcased his ability to look at life as a joy and something to be lived and not survived, has encouraged me. As a result, I felt strength build in me as well. Seems strange that someone I don't know and who only communicates through tidbits of his life in 140 characters at a time could affect me that much. But he has. Even after I've lived through the disappointment of being rejected for a life-saving stem cell transplant, I decided to push through all of it again in hopes of getting a lung transplant. All the paperwork, the tests, the poking, the proding, the hopes, the fears, the pain, all of it. I'm willing to do it all again based solely on the hope that I will breathe normally again. It's not likely Stuart will ever read this but I'm gonna say this anyway:

Thank you. For being honest and open and for sharing your struggle and your journey. Your story reached me and moved me.
Stay strong,
Beth

My lungs made me do it.

2011-07-28T22:13:00.000-07:00

It's time for another update. I'd love to say that things are looking up. Ya know, it's positive and good things are on the horizon. Truth is, things are unclear, heavy and have been coming to me bearing my good old friend anxiety. There have been some wonderfully good things recently too though! I took a couple trips this summer and got to check off many items on my bucket list. In many ways it has been a very happy, fulfilling summer. I sat in the Chicago Cubs dugout, tried new, exotic and ethnic foods, added another stamp to my passport and even enjoyed my first experience on urban/metro transportation. I've seen some dreams of mine come true and I'm excited and grateful for each one. Happy, thankful tears have followed each new experience and my life and relationships are richer and fuller having shared them.

What in the world could overshadow such blessings? Unfortunately, I've found that interstitial lung disease can. No matter how hard I have fought to push the thoughts and the ideas out of my mind, the reality of what is happening to me and what I'm facing, it seems they always linger. Like a big ugly wart on an otherwise lovely hand. It's always there and there is no escape. Literally every step of every day is affected by my inablility to breathe well.

It's funny because I have, at different times in my life, found myself inspired by people in desperate or bleak circumstances. Those people who always seem to be positive and have this message for the world that no matter your struggle, life is good. I find myself wishing I could manufacture that attitude or outlook. I'd love to be the kind of person who could be 32 years old, dying and still telling everyone how wonderful things are. But I just can't do that. There is nothing extraordinary about me. I'm just a regular person who has scleroderma and whose lungs are slowly becoming rocks (almost literally). So I need others to understand that yes, wonderful blessings still come in my life. And yes, I am indeed thankful for them. But more than that, I feel like life is just hard. For real. THIS. SHIT. IS HARD.
Frankly, I have become such a complainer and so intolerant of things that I feel are stupid or a waste of good time and energy. I'm not good at faking any of it. I try but that seems to take energy I don't care to spend. On the flip side, I definitely think kindness is important and I do make efforts to be kind but man, the trivial things just get to me.

In about a week I'll start a process of pre-qualifying for a double lung transplant. (I can't believe I actually just wrote that sentence.) It's crazy I'm here. Already. There's a lot riding on these first few tests. Actually, my life is riding on these first few tests. Basically they need to know if my esophagus is working well enough not to destroy new lungs were I to get a transplant. The long and the short of it is that if my esophagus isn't functioning properly, I'm immediately eliminated from the possibility of a transplant. If it seems to be working ok, then I can continue on with more testing and searching for a hospital with a program that will accept me. And yes, we are this point. My lung function numbers have steadily decreased since my diagnosis and so much so over the past year that my oxygen use has doubled and my oxygen saturation has dropped, at times into the 60s without supplemental oxygen. (If you're not sure what that means, a quick google search will clear it up.)

So all this to say, sorry if I've been a jerkface to you at any point but the truth is, I don't appreciate this whole situation much and it's not really bringing me a lot of warm fuzzies. I'm doing the best I can with what I have but I admit a lot of times the best I can is just a lot of crabbiness. Maybe some epiphany will come that changes my attitude and brings some acceptance and understanding but for now, know that in my heart I'm not really a jerk I'm just a little pissed off at life. So, uh sorry I guess.

Brand New

2011-03-08T21:46:00.000-08:00

I've been thinking about the title of my blog. "The Journey to a Brand New Beth". I named it in the midst of the fundraising campaign to raise money for a stem cell transplant. It made sense at the time. I thought I would have this transplant and it would transform my life. I would have remission and hope, hope that my health would be brand new. Since I was rejected for the transplant, it's been difficult for me to see how that old title I chose could still apply. It seemed to me that the same old Beth wasn't becoming brand new. I was becoming a sick girl on a quick road to a short, stationary life.

And then a few days ago I was looking through pictures I had been tagged in on Facebook. I came across a picture that had been taken of me 10 years ago by my very favorite International student at college named Yoko. I was completely shocked at what I saw. I studied the picture and then clicked back to a picture of myself taken just a few weeks ago and couldn't believe the difference. I clicked back and forth and back and forth. An unbelievable thing has happened to me. I absolutely LOOK like a brand new Beth. Feel free to take a look at the difference:

Ten years have passed between these photos but my spirit feels just as alive as I was at 22yrs. I've learned a lot, some big lessons and a lot about love.

#1. I've learned to roll with the punches where my physical body is concerned. Ten years ago didn't look that great but I was VERY healthy. Now, I look ten times better but my body is incredibly unhealthy. Life's funny like that and physical beauty means so little when you're forced to get down to the core of who you are.

#2. Nothing on this planet can replace the love and importance of family and a support system. I'm the luckiest girl on the planet to have people who have sacrificed and continue to sacrifice time, money, work, and many times their own personal preferences to help meet my needs. I hope that when things get hard in your life, and they will, that you have even a fraction of the love and support I have. They make me strong and happy.

#3. I have learned over these 10 years what love is. The completely unselfish, 100% committed, humbling, real thing. And her name is Sandy. My mom has been my biggest teacher, supporter and example of love. She is responsible for me being who I am. (So if you don't really like me much, you might wanna take it up with her.)

#4. This is the biggie. Here's my single biggest passion and I've learned all about it. TIME. As in, it's here. And it's passing by. That picture from 10 years ago shocked me, but I can tell you this, when I look in the mirror I don't see that big of a change. Almost like no time has passed. It just goes so quickly and before you know it, a decade is gone. If I had known at age 22 what I know now, that I would have a progressive, incurable disease. That my lungs would fail me and my biggest dreams would always be out of my reach, OH how different these ten years would have been. The trick here is, we don't get that advantage. None of us. So stop and think now. Stop wasting your time. Here's what matters: God (or whomever/whatever you believe in) and your human relationships. And that's it. Period. Take care of what's important, stop being so serious and get over yourself. Stop worrying about failing someone else. Stop letting someone else tell you what you're worth. Stop waiting around for your future to fall in your lap. Stop being selfish and start being kind. And go live. Enjoy this time because you don't have a lot. Cliche of all cliche's but it's true.

The thing is, I am becoming a brand new Beth. You can see it in the pictures but more importantly I can see it IN me. I want to grow more and learn more and love more. I'm tested daily and trust me, I get testy! But I don't care about money or fame or status. I just wanna love and be loved, just like everyone else. And I'm not afraid to admit it!

The brand new me will come. I'm still on the Journey.

Happy Times!!

2010-12-01T18:37:00.000-08:00

About 15 months ago, I made a promise to myself. I promised that I as long as I was breathing, I would never stop living. I want to experience new people and places and things. I have been blessed over and over with opportunities to do just that! Each experience has come about with its own set of unique circumstances. Instead of boring you with long-winded stories and commentary, I decided to put together a picture blog of the past year and a half. I have included as many events and traveling adventures as I have pictures of...some are not represented but every single one has made my life richer and fuller!

Sugarland and Keith Urban concert in Nashville!

Miranda Lambert at Ryman Auditorium with Erin!

Sara Evans in Indy with Claire!

Gatlinburg getaway with Emily, Erin, Rachel, Rebecca, Kasie and Vanessa!

Panama City Beach with my dad and friends. Nov 2009

Zac Brown Band with Emily at the Ryman!

New Years Eve at BB Kings in Nashville with Emily, Erin, Rachel, Sarah, and Vanessa!

Visiting my brother and family in North Carolina. Feb 2010

My niece, Lydia born 3/8/10!

Bon Jovi concert in Nashville with Claire and Rachel!

Memphis with Erin!

Claire and I spent a week in the Monterey/San Francisco Bay, California area. This is Pebble Beach.

Patty Griffin concert at the Ryman with Claire, Emily, Rachel and Erin!

Panama City Beach Girls Getaway! Fun in the sun with Emily, Erin, Rachel, Vanessa and Kasie!

North Carolina beach vacation with my brother's family, my mom and stepdad!

My 32nd Birthday dinner with Erin and Rachel at The Melting Pot!

Dinner pre-Chelsea Handler stand-up in Nashville with Carin, Erin, Emily, Vanessa and Rachel!

First time at Lucas Oil Stadium for Colts and Giants game. Colts win!

I got to meet Chris Franjola after his stand-up act at Zanies in Nashville!

Panama City Beach for golf with Emily, my dad, Barb and their friends!

Colts game number 2!! Ochocinco and T.O. were no match for my Colts!

I consider myself incredibly lucky and I am more than excited for all the things to come!

If we're talking about clouds, are they 'grey' or 'gray'?

2010-11-24T20:22:00.000-08:00

My bedroom is warm and my TV is fixed on ESPN but the only sound is the hum of the ceiling fan. These are the dangerous times. It's Thanksgiving eve and here I am, thinking. It sounds a lot like complaining to say that the holidays just don't have the same shine they used to. At the same time, the more I think about it, I don't think that idea is all that uncommon. As we get older, I think the way most people look at the holidays or feel when they come around, changes. Life changes. Hearts get broken, loved ones pass, illness strikes, homes are lost...lots of things skew our view.
For me, as a child I was the type that loved every second of every holiday. And this time of year especially, I was happy and filled with excitement and just plain ol' happiness. Being with my family, helping prepare meals, holiday shopping, just the cool air and decorations energized me. Then my parents' divorce came. Some of those things changed and felt and looked different but over time I adjusted. So I guess you could say there was a tiny gray cloud over some of my favorite days.
Just a few weeks before Christmas, sometime in my mid-twenties, I met this guy. And I admit, I fell quick and hard. I lost my mind (in a good way) over that man and I spent a year in total happiness and bliss. I was in love and I found the man of my dreams and I trusted and believed in him completely. That next Christmas Eve I found myself in one of those movie scenes where the guy is at his girl's family Christmas gathering and he's getting on his knee in front of everyone there telling her how much he loves her and asking her to be his wife. I said yes! Fast forward a few months and he had changed his mind and wrecked my heart. The blow was devastating and the gray cloud grew a little, taking a wee bit more of my easy joy of the season.
Almost exactly two years ago, I had my very first Pulmonary Function Test. I knew something wasn't right and I was scheduled to see my Rheumatologist I'd seen a couple times for this weird thing that happens to my hands when they get cold. My little sister came in the room with me and as I took my first breath and following the instructions of the tech, blew as hard and fast as I could into that machine, tears immediately began to fall. I KNEW something was wrong and not just a little wrong, but life-changing wrong. Days later I found out just how right I was. I had scleroderma. Diffuse Systemic Scleroderma. And yes, it's just as scary and terrible as it sounds. At 30 years old I was told I had a progressive, incurable disease. And right in the middle of my 'joyful season'. Talk about gray cloud growth!
Over the last two years I've had nearly every up and down and all around experience you can imagine. Most of the people that will read this know, I'm holding my own at this point and I'm doing the best I can. And this year, that gray cloud is present, it always will be. It's part of life. Everybody grows one.

Be happy and thankful. I sure am. My bedroom is warm, UK is getting handled and I get to eat pumpkin pie tomorrow!

That list you get from a bucket

2010-10-20T20:04:00.000-07:00

Part of this journey for me has been learning and accepting that there are things I have always wanted that just aren't possible. Lifelong hopes and dreams have been eliminated by scleroderma, a terminal prognosis and lungs that just won't stop scarring. Having a baby or buying my own home are completely out of the realm of possibility.

I have recently read tons of FB updates about friends getting pregnant, having babies, getting married, buying a new home, and starting new jobs. I have been genuinely happy for each of them but I would be lying if I said there wasn't a part of me that feels a sting each time I read them. There are all of these huge milestones in life that any normal person strives to reach and they just aren't going to happen for me. And that makes me sad sometimes.

Soooooo, instead of feeling sad, I dream about other things. And I made a list. It's a list of things I very much want to do and as of right now, am still able to do. It's not a list of EVERYTHING but it's a great start. These things are not in order of importance and I know some of these items may seem ridiculous to some and out of reach to others, but they're MY dreams and I can hope for them if I want to.

Beth's Bucket List

-Spend a week in Florence, Italy
-Visit a luxury spa for a day of pampering
-Ride the El in Chicago
-See Mary J Blige in concert
-Go to an NBA game (preferably a good team and not the Pacers)
-Eat a hot dog from a street vendor in Chicago and NYC
-Take a carriage ride in a large city
-Eat at a five star restaurant
-Have one more first kiss
-Watch Emily, Claire, Erin and Rachel wrestle a pig
-Go to the baseball Hall of Fame
-Sit in the Chicago Cubs dugout
-See a broadway musical
-Try Moroccan and Ethiopian food
-Be in a commercial or an extra in a movie (no acting please)
-Meet a member of the Indianapolis Colts
-Live to see Hannah Beth Scott graduate high school
-Attend an Olympic event
-Ride a passenger train

I Guess It's About That Time

2010-07-08T21:10:00.000-07:00

It's been three months since my last visit to Vanderbilt. On Tuesday, I had appointments to see 4 different doctors and have a PFT (Pulmonary Function Test) done. Yes, that's a ton in one day. Yes, it was exhausting. And unfortunately, it turned out to be the most disappointing day since the whole Chicago/birthday fiasco in September.

See, I've been busy the last two months. I've been so blessed and reasonably happy. I've gotten to take a trip to California and one to Florida. I've spent lots of times at events and concerts with friends and family and to be honest, I've felt pretty good. Meaning, I've felt emotionally pretty good. I have some exciting family time and another beach trip planned. So, I've been looking forward to the next month. I walked into that day of meeting with doctors and truly expected to hear from them that I was relatively stable, maybe even a little bit better. What actually happened was so unexpected and made me feel so defeated.

My PFT results were more than 15% decreased since my last one in April. After a 6 minute walk test, we also found that my oxygen saturation is falling from the normal range when I'm at rest, down to the mid 70s with activity. If you're not a medically minded person, this is NOT good. As a matter of fact, it's "not good" enough that I'm now an oxygen tank totin' gal. I don't necessarily have to use the oxygen when I'm just sitting around but I have to use it when I'm out and about. I won't pretend that this is no big deal. To me, it is. It feels HUGE. It's incredibly emotional and uncomfortable for me. I feel sad and scared about it. I did know that this would happen eventually and yes, I realize it will make me feel physically better, but unfortunately that doesn't take away the less than desirable, accompanying emotions. So, this is an adjustment period. Adjusting to the stares and whispers, the sad looks and eyes full of pity, the running into people I know, the loss of parts of myself and my freedom.

In a choice to be positive, I say this adjustment period will be short. I have great support and just a flat out natural desire to be out in the world. I hardly expect an oxygen tank to be enough to stop me.

What if...

2010-04-25T16:48:00.000-07:00

I have to get up sooo early tomorrow. Ok, so it's just 6:30 am and many people get up way before that, but I am not usually one of them. I'm heading to Nashville...again. I have another appointment with my rheumatologist, the 4th in the last 6 months and I actually have another appointment scheduled that not many people know about.

Several months ago, I was made aware of a few other people with scleroderma getting lung transplants. Although I have known about it for awhile, I hadn't really considered this as an option for me since a lung transplant won't make scleroderma go away. I mentioned it to my doctor about a month ago and she seemed to think it was a possibility considering I don't yet have any other severe system issues outside of my lung function. So fast forward to tomorrow and I'm meeting a lung transplant specialist at Vanderbilt. I wouldn't be able to have the transplant there, as they don't do them for scleroderma patients. In fact, there are only 3 hospitals in the US that do, the most likely being in San Francisco. I'm just going to meet with the specialist tomorrow and she'll do a sort of pre-screening to see if I'm even a possible candidate for referral to a program.

About a week ago the tranplant specialist sent a new patient packet to me with all the information I'd need and in it there was a booklet with facts and program outlines. I read through it and came to the section that listed the qualifications to be considered for a transplant. I stopped when I read that a candidate would have a life expectancy of 18-24 months. I'm telling you, I knew this already. I know this. But there are these moments that happen, where the reality of that timeline becomes acute and almost shocking all over again. Then I realize how precious my time is.

In the past couple of weeks, at times, I've wondered if I've already lost it. I almost can't believe I'm even considering something like this again. It takes a lot of energy and there's so much emotional and mental strain. And then I think, but what if you could live to celebrate your 40th birthday? What if you could see your oldest niece turn 18? What if you were made well enough to walk around Rome one day? I suppose all the "what ifs" are worth at least the first visit tomorrow. Then, we'll see.

This is what they're for

2010-04-19T21:09:00.000-07:00

I have been so lucky to have many good friends in my life. Some from high school and college, some from church and work, some from living in Nashville or Louisville, some from random places or who were friends of friends. Even now, I have more people who I would call friend than I could name. Yet there is this group of girls that are so close and have been so important in my life that the word 'friend' doesn't quite fit.

Sure we do the normal friend things. We laugh, we talk, we cry, we complain, we celebrate. But these friends of mine aren't normal. It's not normal to be a young adult and have a close friend who is sick. It's not normal to sit with your friend during chemotherapy or sell half pot tickets at a fundraiser for her stem cell transplant. It's not normal to have to carry your friend's luggage or open her sodas. It's not normal for your friend to tell you she's dying. Before I found out I was sick, I would have told you I had great friends. Now, I know them, appreciate them and love them in a way I didn't know I could. I can't believe what they've dealt with from me and that they are willing to endure more.

Everything I want to say seems kind of cheap. I definitely feel like nothing I can write down is going to do justice to the privilege of having each of these girls in my life. I do want to say a few things. I want to write your names down and share just a bit of my heart about each of you.

Rachel, you are loyal and loving. You believe in me and support me no matter what. I never worry about your judgement or whether or not you'll be there. You let me go on and on about the same crap and you still listen. You, my friend, are the real deal.

Rebecca, you are probably the most thoughtful person I know. I have never, for one second doubted that you love me and you care for me. I know I can count on you to look out for me and you are always first in line to help. And really, what's Chicago without Peter Cetera??

Erin, girl you crack me up. We laugh so much together and I love every second of it. I feel privileged when you share your heart with me and I am so grateful that you allow me to share mine with you. I look forward to taking those ducks in the Pimpala to get some biscuit food.

Emily, I've known you since puberty. I remember meeting you in church in Junior High, being on the swim team in high school and you letting me invade your group of friends at the lunch table. We share similar taste in music, movies, TV and sports but thank God we would never like the same men! You're my fellow planner and adventurer and don't forget that "we only have each other."

Kasie, we've been friends for the least amount of time but most of the time it doesn't seem that way. There are many years between us, but there's a sense of familiarity in your character and values for me and your friendship has felt easy and natural.

Vanessa, I love you and I'm so glad we're friends. See, I can say that with no Captain! Can you??? Seriously, you've been such a great listener and a constant cure to my loneliness. I really am so so glad that we've grown to be such good friends!

Claire, you're the most difficult to put in words. We probably don't have the most 'everyday' things in common. We don't spend the most time together. We don't have similar families or dreams or beliefs. Still, I don't know that it would be possible for you to be any closer to my heart.

I can't believe you're all still hanging out with me. But I'm so glad you are. I am certainly the most blessed person to have friends like you. There are probably a list of things about me that drive you nuts and unfortunately I will likely give you many opportunities not to be proud of me but in this moment, as I write this I am filled with the certainty that you will be here with me. You'll walk, you'll fight, you'll sit, you'll laugh, you'll cry and you'll hold my hand. Thank you, my buddies, my chums, my comrades, my confidants, my cronies, my pals, my companions, my sisters, my friends.

My point of view

2010-02-08T21:36:00.000-08:00

Nearly three months have passed since I last posted a blog. Many times I've sat down to write or post something I've written and decided to wait. Tonight my heart is tender and sore. I don't want to depress anyone, I just want to stop holding things in. I want to say what I want and stop worrying so much about whether you'll understand me or see me how I want you to. The truth is, you don't have to read this. I'm totally ok with it. But for reasons that I don't feel I have to explain, it helps me to write and share. So I am.

A few weeks after I was rejected for the stem cell transplant, I went back to my doctor in Nashville and started a collection of medications. Two weeks ago I had my three month follow up. I wasn't better. This is/was no surprise to me. I don't feel better. I can't even tell you I feel the same. So the answer is higher doses of some of the same meds and adding a few others. I'm up to 10 pills a day and if you know me at all you know I loathe even the idea of swallowing 10 pills a day. And frankly, nothing makes you feel more a part of the geriatric community than a counter full of prescription meds and a pill sorter.

Even bigger than this, more than all those pills, I've been so caught up in looking back over the past 15 months or so. I sit and I think and literally I almost can't believe what has happened. What IS happening. Just in this time, I got a terminal diagnosis, I've had chemotherapy, I bought into the hope of a stem cell transplant and remission, I fundraised over $80,000 in my tiny community, I endured the most terrifying and devastating rejection of my life, and since have been trying to figure out how to be ok with whats happening to me and watch while the lives of everyone I love continue on around me. What an awkward, painful place to be. Amazingly, this past year has been both a curse and a blessing. Never have I known love or pain like I have these past months.

In all my reflection there is a rather dominating theme in my mind. I've been forced and for the first time in my life able to think about my end. Death is uncomfortable and no one likes to talk about it or spend much time at all thinking about or considering it. But lately I've been thinking that maybe we're all missing out on something. This may not be true for everyone but in general, most of us spend our whole lives pretending we'll never die, or just trying not to think it will ever really end. In doing this, I feel like we're cheating ourselves a bit. I think we should remember that death is as much a part of life as birth. I think when we allow ourselves to consider that we in fact don't have forever, maybe we won't take things for granted so much. And maybe we would try harder to understand and accept and love others. Maybe we'd all be better if we realized that we really could be gone anytime and the impressions and legacy we'll leave mean something. I know this, I would never win a beauty pageant, I'm not a genius, or a stand-up comedian. I couldn't win American Idol or be cast in a toothpaste commercial. I don't own a mansion or designer clothes. I'm not hip or cool. I'm real average. But how I treat people and how I love them matters to me. How my nieces and nephews view their Aunt Beth is important. So I've been asking myself over and over, when I'm gone, how are people going to remember me? I think we should all think about it.

I don't spend a lot of time in my blogs talking about my faith. That's not because I've abandoned it and it's not because I'm trying to be cool and more mainstream either. My thoughts and feelings about it haven't been easy for me to express. I'm sure of this: I have a Creator and He loves me. I believe things work out the way they're supposed to. It's ok if you don't believe that. You don't have to. I do.

Confessions.

2009-11-17T08:26:00.000-08:00

A few weeks ago I had a friend ask me if I ever just get mad about being sick. He thought I seemed to be dealing with it pretty well and was mostly positive. In general I don’t get mad very easily. It takes a lot to make me angry and even more to make me stay angry for any amount of time. In the past, I’ve just been able to let things go easily. On a regular basis over the past few months I’ve had people tell me how inspirational or encouraging I am because I’m staying positive and my spirits seem to be high. Truthfully, up until the last couple weeks I would say that I have, indeed been in good spirits. What I have to say isn’t all that inspirational these days. What I really want to say is this: I’m angry. I’m mad. I’m pissed. I’m irate. I’m livid and every other word you can think to insert here.

I’m mad that I can’t breathe. I’m mad that my hands hurt. I’m mad that I have to take all these pills everyday when I’ve never been comfortable taking meds. I’m mad that I can’t exercise. I’m mad that I can’t even walk through wal mart because by the time I park and get to the door I want to rest. I’m mad that my face is changing so much and my lips are gone and my skin is red. I’m mad that there’s nothing I can do to change any of this.

It makes me so angry that I’m 31, disabled and forced to live with my parents again. I’m angry that I can’t work. I’m angry that it makes me feel unproductive and at times, useless to be without at job. I’m angry that my future no longer holds the same hope it did just a year ago. I’m angry that I’ll never have my own child. I’m angry that the chance of falling in love again has become so small. I’m especially angry that illness has made me an automatic dismissal both by men and by new friendships. I’m angry that I have to search for a way to break the news to new people so THEY don’t feel uncomfortable…as if it’s easy for me.

Maybe if it were just these things I could much more easily deal with it. The problem is, though, on top of all that, I have to deal with people and their judgements and misunderstanding and careless words. That pisses me off. I am livid that any one person on this planet expects me to explain how I’m affording to or able to go to concerts or on roadtrips or even bigger trips. And even more so, that anyone would actually accuse me of taking advantage of people in situations or for material things. First of all you clearly don’t know me and second of all get over yourself for a minute and consider my situation. I have no real hope of living more than a couple years. While I am alive, I live with my parents and before I got sick I didn’t make a bunch of dumb decisions and get myself into a lot of debt. My bills (outside of medical ones) are few. Concerts, trips and other things have often been offered to me by people who love me and want to see me experience things that make me happy. I am not spending a lot of money on anything, as there isn’t a lot to be spent. Also, while I’m living so extravagantly and taking advantage of everyone, I also struggle to breathe and feel normal constantly. My chest is tight and I have skip doing lots of things I’d love to do. Asking people to help me all the time sucks. I hate it. So I say this to you, I’ll trade ya. I’ll take the job and the responsibility…and along with it, I’ll take a future and my dreams back and a more normal daily existence.

Obviously that can’t happen. And yes, I admit, I’m angry about it. But if I stay angry, I won’t enjoy what I do have. It might not be a lot or for long, but it’s what I’ve been given. I know I have to make the most of it to be happy. So I wrote this in an effort to let some of this go. It’s difficult for me not to worry about what people think, but I’m making every effort to do just that. If you’re not on my side, if you’re not gonna walk with me through this, then I’m not gonna spend anymore time worried about what you think or say.

Long time, no update. Sorry.

2009-11-04T21:42:00.000-08:00

I haven't felt like writing lately. Or maybe the truth is, everything I've wanted to write hasn't felt right to share. Sometimes, everyone doesn't need to know everything. I feel like it's a good thing to keep some things for just me and maybe a select few who are close. This doesn't mean there's been nothing going on though. I do have some medical updates for those concerned and a couple other things I'd like to share too.

I began taking Cellcept about a month ago now. After taking it for only 4 days, I began developing mouthsores. I contacted my doctor and she recommended I stop taking it until the sores healed. The did heal after several days and at my doctor's request began taking half the dose for a few weeks to sort of ease my body into taking it. I have been taking the full dose for almost a week with no problems and no side effects at all. So far so good...

I also went to see a pulmonologist last week at Vanderbilt. Everytime I think about this visit, I just can't believe how blessed I've been with finding amazing doctors who are caring and thorough. I have heard some pretty awful stories about some people who see doctors who don't listen or treat them with much respect. Thankfully, I haven't had ANY experiences like that. The pulmonologist addressed my pulmonary hypertension. He told me mine is mild but he did want to put me on some medication that would also help with Reynaud's (my blue, numb fingers in the cold). I'll follow up with both him and my rheumatologist in January.

I've had this increasing desire to share with my friends and family and supporters what has become of the money that was so kindly given and worked so hard for during the fundraising for the transplant. Because I wasn't able to get the transplant, the hospital paid all of the bills I racked up with tests and procedures in that first week with the money we had provided them. The remaining money was put back into the fundraising account here locally. This account is managed by a few of my family members and the remaining money will be used for medical bills (MD visits, medicines, tests, procedures, emergency care, etc). Because I am not insured, this money will basically serve as my insurance money over the next year and a half. I will hopefully be eligible for Medicare in the spring of 2011. I realize I am not REQUIRED to explain myself, however, the hard work and giving hearts of so many people make me realize the responsibility required of me and the respect I want to show. Thank you. Thank you. Thank you.

I'm doing well. Life's funny. It's not easy all the time but I can't even explain how blessed I am. I got to spend a much needed weekend with my best friends in Gatlinburg and I'll leave in just a few days to go to Florida with my dad. The holidays with my family are just around the corner and I can't remember the last time I wanted to see winter so badly. Probably never. There are so many happy times to be had and warm memories to make!

Is there a reset button on this thing?

2009-10-15T21:14:00.000-07:00

I’ve had one of those days where I can’t wait for it to be over so I can try again tomorrow. I don’t usually wish days away, but this has been one that no matter what I do, I can’t seem to make myself rise from the funk I’m in. I can honestly say that I didn’t even recognize myself today. I was sad and down and irritable and short and just all around nasty. This has simply not been a good day.

I found myself in a situation last night that left me feeling misunderstood and undervalued. I didn’t realize until now how shaken my confidence is as a result of my diagnosis and well, prognosis. Social situations are my thing. Or at least they used to be. It’s hard to make me uncomfortable and I always know what to say and how to behave. Unfortunately, that’s totally changed and in an unfair way. Now I’m finding it hard to know what to say or how much to say. It’s even difficult sometimes to hear the things that people would say in response to news like mine. Pretending its not there bothers me, but treating me as though terminal illness is all there is to me, is hurtful.

The thing about last night is that I don’t even really know this person. And to be honest, it’s not high on my priority list to get to know them, but their carelessness and insensitivity seemed to push up all these feelings I didn’t realize were such a big deal. I had no idea how insufficient I really feel now. How insecure I had become in light of my illness. Most of today, I have felt like I have little to offer. I mean not as a human being, but maybe as a woman and most definitely as the adventure and fun seeker that my heart still very much longs to be. The sadness today came from the realization of all these dreams I’ve had my whole life that were seemingly stolen in a matter of moments just a few weeks ago. This isn’t a pity party for Beth. It’s just me being honest about how I feel. I’ve had these intense dreams and desires to get married and have a family for as long as I can remember. Trust me, it was hard enough to keep these dreams alive before with my old fashioned or more traditional views on dating but now they seem to have died with little hope of living again. I say that because I don’t believe that hope is ever really gone, but I certainly know that odds are not good.

So, the struggle that remains is this; the disease has not yet taken my freedom. I still look healthy. I can still enjoy, most amazingly, all of the social things that make me so happy. The problem is my dreams can’t live like they used to. And a dreamer is what I am. So how can I be myself with anyone who doesn’t know me well? If you want to see an awkward situation, imagine being next to me when a guy tries to have a conversation with me and when he asks what I do for a living the gist of the answer is, “Nothing, I’m disabled.” Real comfortable. There are only 100 of these scenarios that make socializing with people I don’t know well, a balancing act. And it’s one I’m not good at. I have not yet mastered how to function in this new world I’ve been forced into. And then in comes the insecurity. It’s amazing to me how many people have already avoided and/or walked away from me because I’m sick. I know illness is difficult to deal with and I honestly don’t fault anyone for feeling that way.

So here’s what I want to say to anyone who might read this; I’m gonna screw up with all this. I don’t really know what I’m doing. I’m trying to remain the person I’ve always been and who I’d like to be but also leaving room to grow and change. I may not always respond the way I should or say the right things. But I AM trying. Know that I have no problems talking about it with anyone who might ask, but also understand that scleroderma is not all there is to me. I do in fact have a lot to offerand you might be surprised. I could have something to give and we both might learn something.

I don't wanna shake your hand. Just wave.

2009-09-29T20:18:00.000-07:00

Mom and I drove to Nashville today to see my doctor at Vanderbilt. I have an update and somewhat good news. The thing is, before I started going through all of this, I didn't get a lot of this lingo and there's no way I would have understood most of what I'm going to tell you. So, I'm gonna tell you what the deal is, and then make it as simple as possible for those of you who aren't medically minded and are more like I was pre-scleroderma.

So, here's the deal, pickle. My rhematologist, who is the doctor that will treat me for scleroderma, is referring me to a pulmonologist to address my pulmonary hypertension issues. She'd like me to see a pulmonologist at Vanderbilt that sees only patients with pulmonary hypertension. So, this guy knows most all there is to know about it and exactly what it is I'll need. Hopefully, I'll get in to see him in the next few weeks.

In addition, we discussed and agreed that I will begin taking a drug called CellCept. CellCept is an immunosuppressant and is used as an anti-rejection drug in organ transplant patients. I'm taking the drug in hopes that it will address my pulmonary fibrosis and inflammation. My doctor told me today that she has a few patients who are currently taking it and have stabilized. That means that they aren't necessarily better, but they haven't gotten worse either. As you can imagine, this is quite attractive to me given my options. I've been told that most people tolerate it pretty well with few side effects and IF it works, could definitely buy me some time.

The down side to this? Well, two things really. First, the cost. Recently they have come out with a generic for this drug, which is great! The unfortunate part is that even the generic is incredibly expensive. The plan is, let's try it and see if it works then we'll worry about how to pay for it long term. (Plus, I'll apply for assistance with the manufacturer.) Second, the immunosuppression aspect. I'm gonna have to, in part, go against my nature and chill with the physical affection. I have to begin to be more aware of putting myself in situations where I can easily get sick. Less crowds, less handshakes, less hugs...not just because it's flu season and having crappy lung function mixed with the flu is a terrible combo, but also because the drug will make me more susceptible to infection. Don't get me wrong, I'm still gonna do what I want and go where I want, I'm just gonna be more mindful of higher risk situations. I guess I'll have to go with more smiles, winks, thumbs up, pats on the back and blowing my kisses.

Overall, things feel a little brighter these days. I still have diffuse systemic sclerosis. It still sucks. I still have hope. Period.

Family

2009-09-22T20:01:00.000-07:00

For the past week, my heart has been especially heavy. There's no denying some sadness and fear exist but even more prevalent is the increasing awareness of the necessity of family. My feelings and beliefs about family, including their purpose and specific roles in my life have been pushed to the front of my heart and mind. I understand that we don't choose who our family members are. I didn't pick out my mom or my dad, brother or sisters. They were given to me. It is no accident that we're connected. I feel this includes all of my extended family as well. Look, I'm not crazy, I realize every member of your immediate and extended family won't be your best friend. You may not even like some of them. That's ok. But I will say this, now more than ever, I appreciate and understand the gift of family. I have taken advantage over the past several months, and even more so the last week, of connecting with and beginning friendships with many cousins, aunts and uncles that I have not been close to since childhood. The warmth, comfort, love and happiness this has added to my life is welcome and cherished.

I have been blessed with much. I have great step-parents, step-siblings, nieces and nephews, a hilarious and loving grandma and many long-time friends who are like family to me. And man, my immediate family? My mom, my dad, my brother and two sisters...they are my constant. They are always on my side, always loving me, defending me, encouraging me, looking out for me, and laughing with me. I cannot and do not want to imagine it any other way. My parents are amazing and my siblings truly are my best friends.

My older sister, Kristi, is the nurturer, the one I can count on to encourage me and check on me when I'm sick. She's who I call when I can't sleep and where I stop when I want easy company. She's always there. Although she's five years older, she always listens to me and respects my thoughts and opinions. She thinks they're important. Although I realize there's no such thing as perfection, I look up to her as a wife and a mother and in my eyes her flaws are few.

Jarrod is two years older than me and he's the big brother every girl should have. He is truly one of my favorite people on the planet to hang out with and I dare you to try to find someone cooler. You can't. I have always admired him and wanted to be like him. He joined the swim team in high school, so did I. He learned to play guitar, so did I. He went to ISU for college, so did I. He got involved in the Baptist campus ministry, so did I. He got his PhD and is a research scientist, so...I went another direction. :) He's my realist. He'll talk facts with me and let me feel what I feel. We can talk sports, family, religion, politics, current events or just make fun of any and everything. It's simple really. He likes me. And I feel lucky.

My little sister, Carin isn't actually little anymore. She's 2 years behind me and our relationship is the one that has evolved and changed the most over the past few years. I used to think we were very different, but now I see that's not true at all. We're a lot a like. We're both emotional and sensitive. We're both smart and a little sassy. (Her more than me, of course.) And I can always count on Carin to defend me and rise up to fight for me. The great thing is, I can also count on her to cry with me if I need and she never fails to remind me of my worth. She's the pesky little sister that's grown into a best friend.

Then there's my Dad. I confess my Dad and I have only grown close over the past few years. He's always been around and available but I've also always been away or running around. His love for me is great and I've never known that more than I do now. Since I've settled here, I've gotten to know my Dad as more than just my daddy but as a man too. Everyone loves my Dad and now I can see all the reasons why. He's funny and genuine. He's generous and full of life. He's the kind of guy who would own a successful restaurant and stand out back, cooking on a Friday night surrounded by all his friends who just want a fun, welcoming place to hang. Hmm...sounds familiar.

My mom may be mentioned last but she'll never be the least. My mom is supermom. She has loved me beyond measure. She has accepted me and supported me. Rescued me and let me go when needed. She has allowed me to be who I am and although it has likely been hard at times, she tries not to question too much. She taught me to love, respect and accept others and her example of a strong, smart woman is not lost on me. She has sacrificed much more than I deserve and there aren't words to describe the love this daughter has for her momma.

Not everyone has what I have. I know this. But there is absolutely no time like the present to think on and share your love for the people in your family. These gifts of mine are priceless.

Not your typical, everyday post.

2009-09-15T19:55:00.000-07:00

Before I begin with all the information and explaining, I need to put a sort of disclaimer on this blog. My emotions are raw, my nerves are shot and my heart is sad. This is the hardest thing I've ever had to write, so I will try my best to make sense of it for you.

Yesterday was my 31st birthday. My mom and I were in Chicago for all the pretesting for the stem cell transplant and my friend Claire was visiting. We were all three hanging out in our hotel room and the phone rang about 10:30. It was my nurse and she told me that the doctor needed me to come to his office at 3:00. He had gotten some test results back and wanted to discuss them with me. My heart immediately dropped and I became instantly anxious, but she couldn't tell me anymore. The next several hours were unbearable as I waited. I feared he had found something wrong with my heart and wouldn't be able to do the transplant. The doctor had stressed over and over how important the health of my heart is for survival through the procedure.

The time came and my mom and I went to the office and waited. The doctor came in and as the words came out of his mouth, I heard what I had known for hours, months maybe, even years perhaps; I'm dying and there's nothing anyone can do to change that. As reality replaced my disbelief, panic and nausea followed, tears stung my eyes, I felt his hand on my shoulder and glanced at my mother's face. The pain and sorrow I saw was more than I could stand. There are no words for that kind of devastation.

You see, the doctor explained that my arterial pressure is too high in my heart. The blood doesn't flow easily through my arteries from my heart because the fibrosis in my lungs is so bad. My lungs sort of act like a brick and keep the blood from easily getting through the arteries which builds up pressure in them. In addition to this, my right ventricle wall is damaged beyond repair and to an extent that would, when coupled with the high arterial pressure, cause death during transplant. So, no transplant for me.

The next question is, what else can I do? The short answer is, not much. My plan at this point, is to return to my rheumatologist in Nashville for treatment. I will be able to get some meds and oxygen that will make my quality of life better. There is no cure for scleroderma and outside of the stem cell transplant, there is nothing that addresses scleroderma directly, only meds to control symptoms. There are a few experimental drugs being used for treatment of scleroderma but none of the results have been particularly consistent or promising. I will of course look into any options, including these drugs and follow the advice of my doctor.

Does this mean I have months or maybe years to live? I don't know. And I don't want to know. I plan to find some way to be at peace with this, do what I need to do to stay as healthy as I can for as long as I can and I plan to soak up every minute I have left with the people I love, doing the things I love. I have so many people who are always on my side. Many of you worked hard to support me and see me through the past several months and I am grateful. I wish I knew how to express the depth of my gratitude. "Thank you" is all I've got.

Project Stem Cell Transplant: Day Four

2009-09-11T18:04:00.000-07:00

Short and sweet today. My right heart cath has brought much anxiety and fear over the last few weeks. This morning, I found, it really isn't so bad. I was lucky because they could access a vein in my neck so I had a short recovery time. I had to stay for about an hour and half after the procedure only because they had given me a small dose of a mild sedative...told ya I was nervous! Beside the fact that it's creepy to have something in your neck, it really was quick and relatively painless. My arms are now official pin cushions as I had 2 more sticks today. The good news is the pressures in my heart and lungs are high but not high enough to keep me from getting the transplant. And even better, week one is over! I made it!

On a more "fun" note, my mom bought me an early birthday present! A City Pass, which is a booklet of tickets to go to some of the coolest tourist places here in Chicago. I'll get to go to the Adler Planetarium, The Field Museum, The Museum of Science and Industry, The Shedd Aquarium and today after a long nap, we went to the Observatory atop the John Hancock Center (94 floors high!). I took some cool pictures and there are amazing views of Chicago and Lake Michigan. I have company coming to visit this weekend and no tests until Tuesday! And right now, the bathtub and bed are calling my name!

Project Stem Cell Transplant: Day Three

2009-09-10T20:23:00.000-07:00

There was going to be no blog today. I planned to go to bed early but have laid down twice to try to fall asleep and can't. I have to be at the hospital for a heart cath in 8 hours and I guess I'm feeling a little nervous. I figured writing about it might ease the anxiety a little. I keep thinking that after tomorrow morning, I'll be officially through my first week of tests. Feels like it's gone really fast.

This morning I had an MRI of my heart done. Lots of the tests I'm having done are to check and double check the condition of my heart. Dr. Burt explained the other day that the heart is uniquely important in transplants for Scleroderma patients. He says it's very important there's not damage or decreased function or we won't be able to go ahead with the transplant. So far, so good though. I've had a CT scan and stress echo and both seem fine. When they get the results from the MRI and the heart cath and then I meet with the cardiologist next week, we'll know for sure. P.S. The MRI was no fun. This was my first and I wouldn't be upset if it were my last!

The MRI took so long we had to hurry to my dentist appointment. I'm having my mouth and teeth checked because the mouth is one of the most vulnerable places for infection and they needed to make sure there were no causes for concern. I checked out OK, which better have been the case considering I feel like I spent the summer at the dentist getting work done! Something I got really excited about is the dentist I saw happens to be particularly interested in Scleroderma and has a very good understanding of what patients with this disease deal with. She was so kind and took the time to personally make me some custom toothbrushes that are easier to hold! Since my grip is not good and I can't close my hands all the way, she molded some acrylic to the handle of the toothbrushes to make them easier to use. They're so great and it helps a lot!

I had to hurry over to my appointment for my vein check after that. Mostly all that means is someone explained to me that during harvesting, I'd have to get a catheter put in my jugular vein to remove the stem cells. I already knew this, but she educated me and my mom on what to expect and how the day would go. The nurse was a funny lady and after weighing me told me that I should take this time in my life to be thankful that I'm not a size 5. Apparently, women with quote, "a little meat on their bones" have an easier time with harvest and usually only take about 4 hours opposed to 7. So, indeed I am thankful to not be a waif.

As I sit here and think back on this week, I definitely feel worn out. It's been rough at times. But I did it. Everytime I'd be in some uncomfortable position or forced to wait forever or someone has been rude and the thought to say "just forget it" has crossed my mind, I dismissed it and pressed on. (And believe me, those thoughts have come frequently.) Although I had no idea I'd be a pin cushion quite like this, with one stick from a blood draw and 3 IVs in 3 days, they've all been done with no problem. I guess the bottom line is, this isn't fun, as I knew it wouldn't be, but it's bearable. I can do this. At least I have my mom. And Dr. Pepper in the refrigerator. What else do I need?

Project Stem Cell Transplant: Day Two

2009-09-09T18:21:00.000-07:00

Beginning these first two days blogging each day may be a bad idea. I'm not sure I'll be able to keep up everyday. You might actually be glad about that! Some days and things just aren't that interesting. In addition to how today went, I do have another reason for writing. Many people have asked for my mailing address while I'm here in Chicago and I finally remembered to check into that. So, if you're wanting to send something snail mail style, send it here:
The Seneca Hotel
Beth Fortwendel
200 E Chestnut St
Chicago, IL 60611
Keep in mind, this is only my address until the 2nd of October. It will change after that!

Today was a relatively good day. I had to be at the hospital a little earlier and started the day with a Pulmonary Function Test or PFT to those familiar. It's basically a breathing test and measures lung function and capacity. PFTs aren't my favorite tests but they are far from the worst! After the PFT I had a stress echo scheduled. This test, in my opinion, completely sucks. Really I'm not complaining about it because it just has to be done, but let me just give you the low down on what happens during this 90 minute test. In only a hospital gown, I laid on my side in a room cold enough to hang meat. I did have two blankets on but nothing on my hands and they get so crazy cold, it wasn't long before I was pretty miserable. But really this is the tolerable part. Besides being cold there's a blood pressure cuff on my left arm, which is the side I'm laying on, that goes off every 3 minutes. I have an IV in my right arm that is intermittently getting medication passed through. In addition the tech is jabbing an ultrasound wand thingy (I don't know what they're called) into my chest and ribs. And I mean jabbing hard enough it's painful. Also the tech is asking me to take breaths and hold it while he takes pictures and this is especially hard because I can't hold my breath as long as the normal person so we keep having to do the pictures over. And best of all, on top of all that, half way through the test they start giving me a medication that makes my heartrate go from around 80 up to 160. So my heart feels like its beating out of my chest, I'm shaking from being cold, I'm trying to remember to hold my breath long enough and hold my left arm out when the blood pressure cuff goes off. This test is NO fun and I'm always very glad when it's over.

So after all that, we had lunch in the cafeteria and got a chance to meet with the transplant doctor. Our visit was short and sweet. He reminded me of the risks of transplant and likely results. He told me that over a period of a few years I would see great improvement in my skin and potentially some in my lungs. He said there are some people who do not have much lung improvement and there are some that do. I've decided I'm ok with either, as long as they don't get worse. That's the biggest concern for me.

I was done by 2:30 so we came back to the room and had a short nap then we got a little dinner and walked through a few stores close to our hotel. I feel good about today and hopefully tomorrow is even better. One thing I have already found that troubles me about Chicago, I can't find Dr. Pepper in any restaurant I've been in. What's the deal? Didn't they know I was coming?

Project Stem Cell Transplant: Day One

2009-09-08T18:54:00.000-07:00

Ok, so I'm tired already and we just started today! I spent about 8 hours at the hospital getting all kinds of fun things done. I got to meet with Kristin, the nurse liason for the stem cell program. She's great and she sat with us for about an hour and explained the whole process and what to expect during each phase. Some things seem way less scary now and some things are more concerning.

I had labs next. They needed 18 vials of blood for testing. EIGHTEEN. Ridiculous. It was smooth sailing with no problems at all.

After the labs I had to go to yet another floor and department to get an EKG. The test was quick and painless and not really noteworthy at all. What WAS noteworthy was the walk into the department. A lady about 3 times the size of me using a walker on wheels was called back just before me. Instead of waiting for a tech to come open the door for her, she attempts to pull the door open (which opens toward her) on her own. I'm just behind her and see that she's having a hard time so I step up right behind her and try to grab the door to help so she can pass through. Just as she tries to move backward out of the way, she loses her balance and falls into me, pinning me against the wall. I'm holding all of this lady's weight on me for a good 30 seconds before a tech gets there to help her gain her balance again. That was fun. Actually when I think back, it probably looked hilarious. Wish I would have seen it instead of being involved.

Then the real fun came! I waited for an hour and 30 minutes to get several xrays and scans done. I'm normally fine with the waiting. I understand things get backed up but I was in a hospital gown and it was freezing. I had a chest xray, a CT scan of my chest, sinuses, abdomen and pelvic area. I was told before that I wouldn't have to get an IV, but of course I get to the waiting room and they call me back to get one. I consider that minor compared to the nasty Barium drink I had to down. Three bottles of that stuff in an hour. Simply put, it was gross. So really, I can't say I love being in the radiology department.

It's been a long exhausting day. Running around the hospital to different appointments with different demands at each will wear you out! I feel better after getting to eat and take a bath (in the jetted tub!) and relax. I am very grateful for one lesson I've learned while here though. I'll save you the visual, but last night I learned that bathtub jets can be powerful enough to basically flood the bathroom. Good to know.

My new, old love

2009-08-31T22:20:00.000-07:00

I have had this series of long term relationships over the years. With music, not with men. Since the time I've been old enough to choose what I listen to on my own, I've dated several different genres. I tend to listen to only one 'kind' of music at a time, with maybe just a little sprinkling of others in the mix. Most of my teen years were spent listening to top 40 Pop stuff. Then I had a very long love affair with Christian music that lasted from college through the time I started Grad school. I even had a short fling with jazz while I was in Seminary. About three or four years ago, I had my first relationship with Country music. It lasted about a year and then quickly faded into a love for hip/hop and R&B. During this summer, my love affair with Country music has been reignited.

I've been a little better this time with dating around and including other types in the mix, but mostly, my car radio, my Pandora stations and my MP3 player stay on Country tunes. As silly as this might sound, Country music reminds me of home. Yes, I realize that I quite literally live at home. But there is just something comfortable and familiar about the melodies and music of Country. I think it's one of the few genres of music that can make you feel the entire spectrum of emotions.

It's possible that this rekindled love was influenced by the 8 or 10 trips to Nashville I took this summer. I took advantage of each, and although I experienced other types of music there, was most impressed by the Country. So I admit I was one of the last to know Sugarland was going to be in concert in Nashville this past weekend. I've been a fan of Sugarland since their first album, although during my hiatus from Country music, missed an album or two in the middle. Anyway, if there is ONE group I'd want to see in concert, Sugarland would be the one. The Nashville show sold out quick, I'm sure since they were playing with Keith Urban. But cool as my dad is, he hooked me up with a pair of tickets to go anyway. I packed my clothes and grabbed one of my favorite people in the whole world and headed to the show on Saturday.

Our seats were not good. Really, they were in the top section. Thankfully we were facing the stage so our view was clear...just VERY far away. Surprisingly, I didn't care. Neither did Claire. From the first note of the first song until the last, we were caught up. There were even tears a couple times throughout their performance. It was such a great experience. I can't remember the last time I just felt that happy and carefree. The thing is, this wasn't just a concert of a band I like that I went to with a friend. It was a lot more than that. It represented some of my favorite things in the world and I got to experience them in what felt like perfection. Not a night I'll soon forget.

So, my relationship with Country music continues although we aren't exclusive. I'm still dating around and may never commit to just one, but Country remains the frontrunner for the months to come. I look forward to many more happy times together.

The "what, the "how" and the "then what" of it all.

2009-08-26T22:53:00.000-07:00

Over the past few months I've gotten lots of comments and questions, said with a good amount of surprise like, "Wow, you look really good" or "You seem to be doing great" or even "You don't look sick". Most of these come from people who either don't know me well or haven't seen me in quite some time. It's true though, I do look and seem pretty normal...from the outside and when I'm just sittin around. I've had lots of questions about what Scleroderma means to me, as in, how has it affected my body and my daily life. And of course, people want to know what the hope is for the transplant.

Each person with scleroderma has a different story to tell. In many ways, I consider myself fortunate. My skin is affected but only in my hands, forearms, face, neck, chest and shoulders, with my hands being the most severe area. Even though my hands are the worst and they are limited to some extent because of skin tightening and thickening, I still have, what I consider, good use of them. Mostly I'm just limited in things like opening cans or bottles or doing anything where I have to use a tight grip. My lips have thinned and my nose has narrowed, but these are cosmetic and are not at all threatening to my health at this point. I also experience issues with heartburn, which is very common in people with scleroderma. There is often some scarring and issues with the esophagus but for me, it's as easy as taking a pill each day and I have no more heartburn worries.

The most serious and alarming issue that I'm facing is the progression of fibrosis in my lungs. Their function has been very seriously affected and is what prompted the updated diagnosis and choice to receive the stem cell transplant. Without explaining every measurement in detail, and as I understand it, most adult non-smokers have about 80% lung function. Mine is somewhere in the lower 30s, last it was measured in April. I received chemotherapy once a month for the first six months of the year to address this problem. I had little or no improvement as we expected and continued to pursue the transplant. As far as my daily life, I do have to take my lung function into consideration. I am commonly short of breath in activities as normal as showering, dressing, fixing my hair, etc. I've learned lots of ways to adjust the way I do things and have had to eliminate some things I used to do. I take more baths than showers and give myself more time to get ready than I used to. I don't do the amusement park thing anymore and I'll plan to only go to 1 or 2 stores instead of shopping all day. I'll ask to be dropped off at the door instead of walking blocks to our destination and I might only dance to one song (and rather slowly) instead of being on the dance floor all night. HOWEVER, I can still do lots of things I love and I do in fact still look pretty normal. I feel blessed to still be able to read, see concerts and live music, eat out with my friends, play with my nieces and nephews, shop with my mom, sing in the car and laugh with everyone I love.

So, what are my hopes and expectations for the transplant? First of all, my hope is that there is no longer any active progression of scleroderma in my body. In other words, I want it to never get any worse than it is right now. Secondly, I hope that over the course of the first two years post-transplant, my lung function improves at least 20-30%. And of third importance, I'd love for my skin to soften and be flexible and pretty again. Opening a jar of peanut butter would bring great joy! :) As far as I know, because the transplant is still in the investigational stage, there aren't a lot of published statistics on the outcomes. I know that over the past several months I've learned that the number of people with positive outcomes FAR outnumber those without. With most things in life, there are no guarantees. I am willingly going through the transplant with no promise that I'll get "better".

I understand this but I choose to believe that I'll have many more years to enjoy life and those I love. I even choose to believe that many of the dreams I've had for my life for many years will still happen. I believe that one day I'll play guitar again, that I'll be a member of a gym, and that I'll have a family of my own. I know that someday I'll walk around Rome and I'll go back to Africa. I don't say any of this because I'm trying to be inspirational or to convince anyone of my "great attitude". I'm saying these things so that you each know how much I have wanted/needed your prayers, encouragement, positive thoughts and kind words. I have used them and will continue to do so. Thank you, thank you, thank you.

The Lowdown on the Stem Cell Showdown

2009-08-20T19:52:00.000-07:00

I received the transplant info and I promised to share so here ya go! The date to begin is scheduled for Tuesday September 8th and we'll head up to Chicago the day before. So, here is the general schedule for the transplant:

Sept 8-18 -- Outpatient daily testing including but not limited to, Pulmonary Function Test, Chest CT Scan, Right Heart Cath, dental exam, vein check, Heart Echo, and something like 5 zillion blood tests. There will also be other tests, but I'm not sure what they all are. Basically, they are going to check every inch of my body, inside and out. Sounds fun, eh?

Sept 21 -- I will be admitted to the hospital for mobilization chemotherapy. I will receive the chemo and then be discharged the next day. Within 5 days after mobilization I will begin taking Neupogen injections daily for 6 days.

Oct 1 -- This is stem cell harvest day. I will get a catheter in my jugular vein to pull out my stem cells. If there are not enough stem cells collected this day, they will repeat the harvest the next day.

Oct 3- Oct 21 -- THIS IS THE BEST PART!! I get to go home for almost three weeks! I had no idea this was the case and I am soooo happy about it. I won't feel bad yet and I'll get more time with my family and friends before I do!

Oct 22 - Nov 7 -- On the 22nd I'll be admitted and begin chemotherapy. I will receive chemo for 5 consecutive days. The sixth day, which would be Oct 27, is transplant day! I'll get my stem cells back, then we wait for my immune system to rebuild itself. Anticipated discharge date is Nov 7. It is possible and likely that I won't come home immediately following discharge as I will likely have to be close to the hospital for at least a week for check ups.

I am glad that we anticipate being done and home before Thanksgiving and I pray that remains the case. I have no desire to spend the holidays in the hospital! I have lots of things planned for myself in the next 2 1/2 weeks before I head to Chicago. The nervousness and anxiety are ever present, but I am confident that I am equipped with who I need around me and what I need inside me to successfully fight my way through. I can't promise I won't whine or complain or vent along the way, but I promise to try my best to keep the goal in sight. Thank ya for readin' and followin' and prayin' and lettin' me know I'm loved. And now I'm off to pack for my very first trip ever to the Indiana State Fair...yeah, that's right. Be jealous.

Loving With Intent

2009-08-16T21:45:00.000-07:00

I'm in my third night of a short "vacation", as I'm calling it, to visit a friend in Nashville. I plan to leave tomorrow and head back home but can't seem to fall asleep as my mind is so full. I was thinking about all the running I've been doing lately: the short roadtrips, the dinners, concerts, movies, nights out with friends, shopping trips, etc. And I suddenly realize what I haven't been mindful of...my need to just experience feels urgent. Experience any and everything. If I'm totally honest, I feel hopeful the transplant will be a great success and deep in my heart I feel I have a lot of life left to live. However, I understand the reality. There are no guarantees here. I am not promised old age...or even middle! So knowing the transplant will begin within the next month, has moved me to action. Action in everything but maybe the most important thing.

A few weeks ago I had a conversation with an old college friend and we were talking about the fundraising and all the money that had been given and all the hard work that had gone into each event. She stopped and said, "Doesn't it make you feel good to know you're so loved?" I told her I did but then I told her that in a way it made me sad that I had to get sick to realize it and how we should all, myself included, be more intentional with our love. So, I've been sitting here thinking back about my weekend and all the fun I've had and the great things I've experienced and it hits me how many opportunities to love people I've missed.

Don't misunderstand me. I'm not beating myself up unnecessarily. I do believe that in general, I'm a nice person. I try to be kind and understanding and forgiving. But I'm talking about doing more. There are many times where if I weren't so caught up in myself or just plain lazy, I'd love people in actions so much more. I know I'd be well served to think of others more often, work to meet others needs and be more understanding and accepting of differences.

I have amazing family and friends who show me how loved I am all the time...and in little ways. I get dropped off at the door. I get my chair carried for me to Shakespeare in the Park without even asking for help. I get my cans or bottles opened so I don't injure my fingers. I get an extra blanket or jacket when I'm cold. I get phone calls, letters, cards and emails just to see how I'm doing. The people who love me, do it well.

I'd like, myself, to be this way all the time. I want to recognize opportunities to love and encourage and I want to take advantage of them. I wish we all would. I believe being mindful of people outside of myself will make my life better. I believe God feels this way too and I'm thankful He's put so many great teachers in my life.

Bloggin' it

2009-08-11T20:44:00.000-07:00

I've gone back and forth a lot and struggled with the decision to start a blog. I worried about having nothing to say or seeming arrogant, assuming people would want to read about what I think and do. The truth is, never in my life have I felt like I had more to say. Maybe none of it will matter to anyone but me, but I can't escape the desire to write it all down. On top of this, I have found myself in recent months scouring the internet for websites and blogs of other people with scleroderma. I just wanted to know their stories. I wanted to know what happened to them, how they dealt with it, what they did about it. Each time I read something I found myself wanting to know more, wishing I could get more details or more explanation. So, I figure here's MY chance to do that for someone else. I can talk about the disease or the transplant or the fact that I had fillings done in my teeth today and still managed to eat three donuts! I'm not sure the donut info will help anyone, except maybe to show that things may not be perfect for me right now, but I'm enjoying my life in spite of it all.

Though this is technically my first post on this blog, I have already posted some things I've written and previously posted on Facebook or my website. I will no longer be updating in either of those places. So, be sure to check here if you wanna know what's up.

Many people have asked when I'll be going to Chicago for the transplant. I'm disappointed to tell you that I STILL don't have a date. However, we expect it to be in the next 3 to 4 weeks. For me, that's plenty soon! Besides, I'll just use this time to squeeze in some more fun, make a few memories and have a couple more donuts!

Kidneys and Football

2009-08-01T20:30:00.000-07:00

I'm one of those people that spend their Sunday afternoon and evenings glued to the TV during the fall and winter months soaking in as much of the NFL as possible. I love football. So, I was no stranger to the man I saw as I walked into the dinner party I had gone with my dad to cater earlier this week. Former Super Bowl Champion quarterback for the Dallas Cowboys, Troy Aikman. He was friendly and gracious enough to pose for a few pictures. He even came into my dad's restaurant for breakfast the next day and you better believe I didn't miss that either! It was a really fun, exciting experience for this small town girl.

Also, since I last posted I had a bit of an issue with what we thought were kidney stones, but thankfully were not. I did have an acute kidney infection and took a little trip to the ER. I'm not sure which hurt worse, my kidney or the fact that it caused me to miss the Def Leppard and Poison concert I had been looking forward to. Either way, the pain from both has passed and all is back to normal.

I also attended the Comedy Fundraiser in Indianapolis that my friend Claire organized in conjunction with her 30th birthday. The whole event went great and my face and stomach hurt when we left from smiling and laughing so much. What an incredibly talented group of people who are also incredibly kind to give their time for me. I had a blast!

I also wanted to take a minute and recognize an individual who has been a great help to our fundraising efforts. Months ago, Ed Ewing, who is a pal of my dad's, pledged a $10,000 contribution to the fund for my stem cell transplant. I hadn't seen him since May and I finally ran into him again this past week and he was kind enough to let me take a picture with him. He and his wife, Linda are so kind to donate in this huge way and I wanted them to know how much I appreciate their generosity. Thank you so much Ed and Linda!

Although I don't have an exact date yet, my mom and I plan to be heading to Chicago by the end of the month. I will update more as soon as I know and in the mean time, I covet your prayers and encouragement. Thank you all again for your love and support.

Grace and Peace to you.
Beth Ann

Fabulous talent from a fabulous friend

2009-07-21T20:29:00.000-07:00

This is a recent blog entry by my friend, Nicole. She's a fabulously talented photographer and is using her talent and big heart to help me! Please, check it out!!

Photography for a Cause | Beth
Beth was the kind of girl who was everyone’s friend. How could you not like Beth? She had a contagious laugh, a giving spirit and the kindest heart. When I met her, I was a freshman at Indiana State University, and Beth was a senior. She took me under her wing for the short time we attended ISU together. We went on mission trips together, did women’s Bible studies as well as hung out and laughed about things only we thought were funny. So after graduation had come and gone, I figured it would be unlikely I’d ever see her again.

Then randomly, while shopping in Evansville, I saw from a distance someone who looked awfully familiar. When I finally realized it was Beth, I didn’t hesitate to give her a hug. From that point forward, we decided to keep in touch. Of course, Facebook helped facilitate that.

And it was also Facebook that was the bearer of the bad news. I’ll never forget reading Beth’s heartfelt note on Facebook that spoke of her newly diagnosed, terminal disease. My heart sunk with every word I read. But through her words, Beth showed that she was strong and she was going to fight this head on.

And I’ve decided I’ll help her fight this fight Scleroderma, too. I am offering a headshot night on August 4 at 5:30 p.m. at The Old Courthouse in downtown Evansville. The cost is a $10 donation to Beth’s transplant fund, and you get the images emailed directly to you for personal use such as on blogs, resumes and web sites such as Facebook and MySpace, just to name a few. Everyone who participates in the headshot event will be entered to win a portrait session from me as well as will get the DVD of images for free (a $350 value!).

I offered to do a photo shoot for Beth to help her raise awareness of her disease and how others can help make a difference. And really, what girl doesn’t want pretty pictures of herself? Here are a few of our favorites:

(You'll need to go to the blog to check out the pics for now! http://www.nicoleneffphotography.com/blog/?p=1320
You should go for sure!)

I also asked Beth to let my blog readers know a little bit about what she’s going through and how you can help. Here is her story, in her own words:

My name is Beth and I’m 30 years old. I have a terminal disease called Scleroderma. Scleroderma is an autoimmune disorder that attacks the tissues in your body and causes you to overproduce collagen. When first diagnosed, I had what my doctors and specialists considered a less severe form that caused me discomfort but allowed me to go on with life normally. However about a year ago my condition worsened. I was then diagnosed with the most severe form of Scleroderma. This affected my lungs and reduced their function as well as affected major areas of skin on my body. It also causes me to be very fatigued. Due to this I am unable to work and without insurance.

Most people with this form of Schleroderma only live about 5 years. This is my fifth year since diagnosis. There is no cure for this rare disorder. However, there is one thing that I can do. I have become eligible for a stem cell transplant. This procedure will essentially reboot my immune system using my own stem cells and allowing my body to go back to a more normal state. Then I can hopefully return to the Beth that once was. However, this procedure costs $100,000 and is being paid out of pocket. My family and friends have been working non-stop to raise money for this procedure. Also, the procedure is being performed in Chicago and I will be there for 2 months with my mom incurring the expense of the stay.

So, I need your help. Please check out my website to donate and learn more about my journey and the fundraising efforts at: www.aplanforbethann.com
Also, it’s very helpful to forward my website on to all you know to help spread awareness. Thank you!

Beth

You can also order prints from Beth’s session by going to www.nicoleneffphotography.com/clients, creating an account and then entering the password “Beth”. All proceeds from print sales will go directly to help Beth pay for her transplant.
So whether you choose to get your headshot, purchase a print or donate directly to Beth’s fund by going to www.aplanforbethann.com, you’ll be helping save a life. My friend’s life.

Nicole Neff

An Update...better late than never!

2009-07-19T20:27:00.000-07:00

When my brother (who manages the site) and I began my website and decided to add an Update page, I had planned to post updates much more often than I have. I'm sorry for being so tardy in my posting. I promise to do better! So before I tell you what's coming, let me update you on where I've been!

The past 6 weeks or so have been very busy. We had a great turnout at the benefit dinner/dance/auction in the middle of June. I had a great time seeing so many of my friends and family in the same place. We raised nearly $19,000 that night for the fund. It was such a great success and it was so satisfying to see it all work out after all the hard work I know was put in to planning and organizing.

Since then we've had numerous food concession stands at auctions, fairs and picnics as well as face painting and balloons at the 4H fair! We've had a yard sale and bake sale as well as a 4th of July picnic of our own at my dad's place, the New Boston Tavern. We've also had a jewelry party and an open house fundraiser selling great products from Tupperware, Pampered Chef, Avon, Mia Bella Candles, etc. We even had a great time at the Cornhole Tournament at Johnny B's in Owensboro. Each event has been such a blessing and a complete success!

In the little time away from fundraisers I've managed to get in a few little trips and events that were a little more personal in nature and a great need to maintain sanity and sustain joy! I've been to Nashville a couple times to stay with a friend overnight and see some live music, one of my true loves! I even went to a New Kids on The Block concert in Indy with my oldest and closest high school friends! Before you judge, let me tell you it was one of the funniest most refreshing times I've had in the past months, whether they're a silly old boy band or not!

I was even lucky enough to get my wisdom teeth pulled between all of this in the past few weeks. I had them pulled one side at a time with the first going much more smoothly than the second! All is well now though and unfortunately, I only have more dental work to be done in the coming weeks before the transplant. This I am NOT excited about!

Also in the coming weeks I plan to attend another concert in Indy with those same silly high school friends. (Do we see a theme here?) Only this time, a little more rock n roll and a little less pop-like. We're seeing Def Leppard, Poison and Cheap Trick. I grew up listening to this stuff and I'm excited to get to see them!

Next weekend is the final fundraiser that is planned at this point. (There may be more in the future, but none have been scheduled.) One of my oldest and dearest friends has organized a fundraiser in Indianapolis at a comedy club in conjunction with her birthday. I'm so excited to go and laugh with and at her. Details for this fundraiser are on the Fundraising Events page.

We hope transplant time will be mid August. I promise to keep you all better informed and will write again after the Comedy night! Thanks so much for checking in on me and be sure to stop in and sign the guestbook! I love hearing from everyone!

God Bless!
Beth

June Update

2009-06-08T20:26:00.000-07:00

As I write this, it's Monday night June 8th about 11pm. My mind is swimming with all the ways to update the progress of our fundraising efforts. In only a few short months, in this tiny community and beyond, more than $30,000 has been donated to the fund to pay for the stem cell transplant. We still have a somewhat long and challenging road ahead and the journey has been a learning one. There have been dead ends and closed doors. There have been "nos" and a conflict or two. For each one of these, there have been 10 new ideas, 10 open doors, 10 yeses, and more blessing and love poured out on me and those in my family than I could have ever imagined. Words don't do justice to the debt of gratitude I owe. I am more thankful than I know how to express.

The antique chest raffle, the golf scramble, the poker run, the mary kay sales, the yard sales, the selling of tshirts, bracelets and candy bars, all of it, was a success because of the great people I have in my family, my circle of friends and my community. So a huge thank you to anyone who has been a seller, a buyer, a giver, a laborer, an idea-person, a supporter, a pray-er, or just a speaker of kind words. All of this is overwhelming and humbling. I don't deserve it but know I am blessed beyond measure.

My spirits are good and my hopes are high. My chance at a brand new life is just around the corner and knowing I am surrounded by so many amazing people makes me excited for each day that comes.

Love to you all,
Beth Ann

And the verdict is...

2009-04-30T20:24:00.000-07:00

Stem Cell Transplant! Almost as good as being proven innocent. After a full day of medical testing, I met with Dr. Richard Burt at Northwestern Memorial Hospital in Chicago and he told me I was indeed a candidate for the stem cell transplant.

Just for some short education, the procedure I'll be getting is called an autologous stem cell transplant. The very basics are this: I will receive chemo and take some shots that push stem cells from my bone marrow into my blood stream, they will be harvested from a vein in my neck then after a couple weeks then 5 more days of chemotherapy to massively suppress my immune system I will be given back or receive the "transplant" of my own "cleaned up" stem cells. I'll then wait in the hospital in isolation for a few weeks for them to sort of reproduce a strong immune system.

Because my immune system is attacking my own body, the idea of the transplant is that we can take out my stem cells, clean them up and then give them back to my immunosuppressed body to sort of "reboot" my immune system. So what's the catch? Well there are two.

One is the risk of infection and complication during the transplant. Because my immune system will be so suppressed, there is a higher risk of infections. There are lots of precautions taken to avoid this, but the truth is a risk remains.

The other catch is the cost. This procedure could cost up to $110, 000. And because I'm not insured, I need to have all the money before we can proceed with the transplant. So, the fundraising efforts are on. We hope to reach our goal sometime before the end of summer. We have a small start already and are working hard to organize and plan.

Thank you so much for the encouragment, prayers and help so many of you have already given. I am grateful and because of so many of you I can continue to be hopeful. Thanks again and I will let you know as fundraising events come.

Beth

Health Update

2009-03-03T20:23:00.000-08:00

Just an update on my health, both physical and emotional...

I started chemotherapy infusions in January. I recieve IV Cytoxan once a month and have had 2 so far with 4 more to go. The chemo will not cure scleroderma but is the standard care to potentially maintain the level of lung function I have. In November my TLC (Total Lung Capacity) was at about 50% and my DLCO (measurement of gas exchange in my lungs) was at about 35%. We hope the chemo will keep my lung function from getting worse and sort of "hold me over" until I can get a more effective treatment.

The part of all of this that I haven't shared with many people is the challenge of being uninsured. It's a very personal aspect of this journey for me, but is necessary to share so that I can explain the possible treatments for me and the reason I have to wait for so long to get them. The truth is, there is a treatment I could receive that if I survived the process, would likely return me to a completely normal life. Stem cell transplants for Scleroderma patients have shown incredible results in reversing the damage the disease does to ones body. This procedure is still considered "investigational" when used for Scleroderma. There are many research studies that offer stem cell transplantation opportunities. The problem is that because scleroderma is so rare and transplants are so costly, none of these studies are funded and the patient must have insurance, be independently wealthy or be able to fundraise the $150,000 it costs for the procedure. The bottom line is that I may have insurance in 4 months or it could take up to 2 1/2 years to obtain. So my challenge is to find a way to not only stay alive that long, but also to stay well enough to receive the transplant.

So I wait. And I continue to research options to maintain and get any sort of improvement in lung function that I can. Roughly 300, 000 people in the US have scleroderma. About 1/3 of those people have diffuse systemic sclerosis (my diagnosis that includes both skin and internal organ invovlement) with 50% of those dying within 5 years. I am in my fifth year of diagnosis, although the severity wasn't known until just a few months ago. I already feel that I have achieved some victories in this journey, considering I still at least appear healthy on the outside.

Scleroderma isn't something I could prevent or predict. I don't deserve it nor do I have a choice. I don't want pity or attention because of it. I only want understanding and support. I have an incredible amount already. Thank you for that. I'll keep you informed.

The Ride.

2008-12-30T20:22:00.000-08:00

I'll begin chemotherapy in a couple weeks. The factual and logistical information about that is more than I feel like typing so I'll update about that later. I'm just FEELING a lot today. I feel better talking about it and writing about it. I use sharing as my therapy. It's funny because I never imagined I would ever be the type of person who would need much therapy. The sheer weight of being faced with your own mortality in such a sudden and unavoidable way, can feel devastating. To be 30 and know that it would be a small miracle to see your 40th birthday is a reality I wish on no one. Naturally, there's a lot I feel, there's a lot to say. Some of it is dark and scary. Some of it is joyful and hopeful. On one hand I look at my life and I'm so thankful. I've been blessed with more than I deserve. And on the other hand I look at my future and there's fear of not so much the end, but more of the suffering until the end. The path my disease generally takes in people, especially at the end, isn't a pretty one. So this note isn't totally a happy one filled with good news and candy and flowers. I don't apologize for that. This is the reality of living and dying. It's my reality. Most people would hear my story and feel sad or sorry for a moment, they may even remember to pray occasionally for me. For all of that, I'm grateful. The truth is though, their lives go on like normal. With each person having their own individual joys and sorrows. It just so happens that my family, close friends and myself have this to face. Three weeks after my diagnosis, I'm searching for a way to turn this seemingly bleak future into as joyful a time as I possibly can. I have had times of feeling sad, confused, angry, cheated...all of it. I fully expect there will be more moments like that. My hope is that I still have hope. No one can predict the coming months or years, but I know each day will come one at a time and until they no longer do I'll make every effort to be thankful. As I see it my only other choice is to be angry or upset because this just isn't fair. But like my wise, wise mother has been telling me for years, Beth, a fair is a place you go to ride rides.

Life

2008-12-11T20:19:00.000-08:00

In the Spring of 2005 I was diagnosed with scleroderma. This is a rare autoimmune disease that not many people have heard of or know much about. In an effort to keep from making tons of phone calls or separate email messages, I decided to write a note to update those friends of mine that I no longer have regular contact with.

Scleroderma means “hard skin.” It is not contagious,
infectious, or cancerous. It is an autoimmune disease in which
the body attacks its own tissues. This causes an overproduction
of collagen. Connective tissue forms the body’s tendons and
ligaments, organ walls, blood vessels, and parts of bones.
Collagen makes connective tissue strong and flexible. Collagen is
a very important substance in the body. When the body makes
too much of it, as in scleroderma, body tissues become hard,
thick, and tight. Too much collagen severely damages, and
sometimes destroys, major internal organs and makes the skin,
lungs, and other organs function poorly.
Scleroderma can affect the internal organs of the body, large
areas of skin, or both. The disease can be classified into 2
groups: localized and systemic. With localized disease, only the
skin is affected; whereas, systemic disease can affect the whole
body, both the skin and internal organs.
Systemic scleroderma, which is also called systemic sclerosis
(SSc), affects the skin, tissues, blood vessels, and major internal
organs. It can be further classified as either limited or diffuse.
Limited scleroderma typically comes on gradually and affects the
skin only in certain areas such as the hands, face, lower arms,
and legs. Skin thickening may take years to develop.
In diffuse scleroderma, skin thickening usually occurs quickly
and over much of the body—hands, face, upper arms, upper
legs, chest, and stomach. In addition to skin, connective tissue
and internal organs such as the heart, lungs, and kidneys are
often affected. (www.sclerodermafoundation.org)

My specific type of scleroderma is systemic and has recently (we believe) progressed from a chronic annoyance to something much more serious. After a few tests and appointments with a specialist we found that my lungs are only functioning at about 35%. Inflammation in my lungs is causing scarring and reducing their function. The good bit of news is that there is treatment I can receive. This however is also where the big decisions come in.

One choice is to take a nasty, costly chemotherapy drug called Cytoxan to reduce the inflammation and prevent further scarring. I could take this drug daily and orally for a period of time. The other choice for me is to go through a screening process and attempt to enter a research study called the SCOT Study. You can read more about it at www.sclerodermatrial.org. Basically there are two separate groups into one of which I would be randomly assigned. One group will receive high doses of IV Cytoxan once a month for 12 months. The other group will receive a stem cell transplant. (There is a lot of info about this on the website but it's important to understand that this does not involve embryonic stem cells. My own stem cells will be taken out "cleaned up" then returned to me.)

This is an enormous decision for me to make. I have to decide how much risk I'm willing to take and how sick I'm willing to get. It may seem strange to write a note about this on such a public platform but anyone who really knows me wouldn't expect any less. It's impossible for me to hide how I feel or what's happening in my life. I'm open. That's always been me. And now I'm being open about the fact that I need your prayers. In addition to that, I want people to be aware. Research can continue if people become aware of the disease and continue to study and give to support it. (www.sclerodermaresearchfoundation.org)

I'll update when a decision is made and a plan is in place. Thanks for reading.
Peace.